Crohn's Disease Forum » Your Story » First timer

06-07-2011, 03:14 PM   #1
New Member
Join Date: Jun 2011
First timer

Greetings all ..

I have recently been diagnosed with both chron's and osteoporosis. I'm 46 and was told that I have the bones of a 70 year old, meaning that it's been going on for quite some time. I underwent several tests for chron's, including Prometheus, but they all came up negative. Plus, I'd been off NSADIS for about year, so they discounted that. I have 8 legions in my small bowel (no where else) and after consultations with a specialist at Cedars my GI still believes it's chron's, especially since I have Osteoporosis. I'm very concerned that I will one day have to have surgery or wear a colostomy bag. I'm about to go on Pentasa and I have really not had many symptoms other than pain in my left side. I drank quite a bit for many years and took a huge amount of Advil for about 20 years straight for lower back problems. Not sure what the future holds but I thought I'd lay this all out if anybody has any advice/suggestions, etc. (I've also started walking and yoga - I'm not in terrible shape as I've been swimming pretty regularly for about a year, but it's one of the two exercises, ironically, that does NOT build bones).

06-07-2011, 08:23 PM   #2
ameslouise's Avatar
Join Date: Feb 2010
Location: Pottstown, Pennsylvania
Hi Des and welcome!

So sorry to hear about your duel diagnosis! Is the osteo strictlly from absorbtion issues, or did you also take pred in your past?

Fear of "the bag" is pretty common among new Crohnies, but as you read around, you'll find that for most of us, it's been a very welcome relief and we live a good life with our bags!!!

I hope the Pentasa does the trick for you and gets your Crohn's under control. Is there hope that you can reverse some of the osteo damage?

Good luck! - Amy
06-07-2011, 09:39 PM   #3
Senior Member
dreamintwilight's Avatar
Join Date: Feb 2010

My Support Groups:
Welcome Destrius!

It's understandable to worry that things may one day become so bad that a colostomy or surgery may be the only option to improve life, but don't get too bogged down in the what-ifs. Like Amy said, most people that end up going the surgical route have seen it as more of a blessing than a curse. Focus on today and how you're feeling today. Let tomorrow worry about itself.

Also...Pentasa is one of the mildest medications used to treat Crohn's. So, I would say, based on that it sounds like your doctor thinks your disease isn't too severe.

It's great that you are exercising. You can work your way up to more bone-strengthening exercises once you are more comfortable. Even walking is better than nothing.

Keep us posted! In the beginning, it feels like your head is swimming with worries, but it will get better.
February 2010 - diagnosed with Crohn's disease.
January 2011 - Inflammation downgraded from moderate-severe to mild with no symptoms!
January 2014 - adopted a mostly Paleo diet
May 2015 - still in remission!

Currently Taking
Humira - 40mg/week
Imuran - 125 mg/day
Calcium magnesium citrate
Fermented cod liver oil/butter blend
Culturelle probiotics
Vitamin D
Vitamin C
06-08-2011, 11:38 AM   #4
Your Story Forum Monitor
xJillx's Avatar
Join Date: Jan 2011
Location: Pennsylvania

My Support Groups:
Hi Des and welcome! I am sorry to hear about your recent diagnosis. It can be very scary when you are first diagnosed and the worry about what the future will bring can be overwhelming. However, do you best to try to take it day by day and not to worry about the what-ifs. As Marisa said, if you are taking Pentasa, it is most likely your doctor finds your case to be quite managable.

Be informed and do your homework around the forum, but try not to work youself up over what the future may possibly bring one day. Stick with your meds, eat well, rest, and try to reduce the stress and I am sure you'll do fine!

Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...

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